Exploring Resilience via Lifes Burning Issues

Tag: choices (Page 1 of 3)

Never like a shag on a rock


Where did the time go?

Sometimes it is surprising how fast another month can slip by…. Like it has since the last post.

An update on Samuel

Samuel has continued doing his own thing, having good days and bad days. Some days heavily medicated and some days less medicated.

Surprisingly he has made it through all of winter without a crashing episode of pneumonia, despite no longer having any of the respiratory support of previous years. The staff at Bear Cottage are just like us, shrugging their shoulders and all they can say is…. It’s Samuel.

His tenth birthday was a milestone none of us expected to make, but it was a great (if insanely busy )week last week celebrating Tanja’s 18th, Taylor’s 13th and Samuel’s 10th.

Another short stint at Bear Cottage

Samuel has been at Bear Cottage since Thursday last week to help us wrap up the week with other events. Taylor and I joined Samuel on Sunday afternoon to spend a few days and unwind, while Jo-Ann and Tanja stayed at home to take care of a few other things.

As usual Bear Cottage is great and provides a good break, and an opportunity to snap pictures like the one at the head of this post.

I love the environment around Manly and take the opportunity to walk/run in places around the beaches and headlands that are such a different view to home. With views like this ….


A shag on a rock.. Or the beach

Today provided a different sort of exercise though …..

Rather than a run or walk to talk in the scenery I spent 45 minutes doing soft sand and shallow water runs to try and catch a Pied Cormorant (a shag) which had a bundle of fishing line, a hook and a big fishing float wrapped around it’s wing.

Calls to wires and to Manly councils animal services said they knew about the bird but couldn’t do anything!

After 45 minutes, a couple of attempts (failed) and a bite from the Cormorant during one of the attempts, local Manly resident Chris showed up just as the cormorant was about to escape from under the towel during another attempt… And with speed and grace had the towel back over the bird, the bird wrapped up and subdued. We took the bird back to Chris’ place (Chris copped a quick bite in the process) and cut away all of the offending material.

Chris’ partner (sorry I missed her name) called WIRES and let them know that bird had been captured and the line, hook and float removed. At the request of WIRES they then took the bird to a nearby vet, where it is spending the night.

It was a different but fulfilling way to get in today’s exercise.

20130903-181945.jpg Chris, Taylor and I with the Cormorant.

Slow and steady..


In the last post I talked about the arrival of that day.

Samuel Four days in…

We have now been at Bear Cottage for four days and it is a slow and steady course we are taking. There have been some changes in Samuel, with increased and thicker secretions, continued lengthy periods of being asleep, some periods of significant increase in his work of breathing, decreased urine output etc. Thankfully so far he appears to be comfortable most of the time and not distressed.

Those expensive machines.. What do they mean now?

We are accustomed to Samuel being hooked up to monitors while hospitalized. Monitors that allow us (along with our observations of how he is going) to be involved in discussions around what actions to take to help make Samuel better, do we add oxygen, do we change machine pressures, do we increase physiotherapy etc etc.

The nature of discussions around those machines and the potential action has changed.. The options now are not about making Samuel “better” but around making sure we keep him comfortable. The conversations also include what value or benefit we obtain having the monitors on Samuel at all. Apart from another indicator that shows us that he is deteriorating what do the numbers mean? The monitors are in some ways now a security blanket for us, without any direct benefit to Samuel. We are slowly adjusting to having the monitors off for various periods throughout the day.

Using the best available monitoring tools…

The most important aspect about providing benefit to Samuel is our observations about what Samuel is doing.. Does he appear comfortable? Is his breathing becoming laboured? Is he appearing more exhausted? When those things emerge what do we do about them? The choices then are about giving him medication to relieve the symptoms, rather than reverse the problem.

We have more choices to make around how long we continue with Samuel’s BiPap.

Seeking quality time

The machines all impede in someway the ability to have quality cuddle time with Samuel, and as every moment we have with Samuel is precious for us as a family it is extremely difficult to make decisions to take away things that have helped us care for him, but we also don’t want those things to interfere with our ability to care for and share as possible with him in these changes circumstances.

That hard place…

The choices we have to make do feel like that cliche of being stuck between a rock and a hard place.. Concerned that withdrawing supports feels like we are hastening his death, and concerned that we don’t want him to be in pain any longer than is absolutely necessary.

things to be grateful for

Thankfully we are surrounded by the team at Bear Cottage, all extensively experienced in helping families in our circumstances, and amazingly compassionate in helping is to walk our way through each of the decisions.

We have also been with other families who have been where we are, or are preparing for where we are.

We could not be in a better place than where we are…

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